Abstract

Interviews were conducted with members of 20 families, including affected males, to explore their experiences of life with hypohidrotic ectodermal dysplasia (HED), which impacts physical appearance. Stigmatisation is an important aspect of life for affected males; choosing how to respond becomes an important aspect of identity. Strategies include consolation, complaint, the rejection of complaint, humour and retaliation. Affected males suggest parallels with racism.
The difficulties of life with HED raise the question for affected men of whether to have children. This prompts reflection upon the value of their lives, which they project onto their potential descendants. While some reject reproduction as irresponsible, others are positive about their lives, are willing to have children and would regard it as wrong to terminate an affected pregnancy. These findings have implications for ‘responsible reproduction’ (an extension of the ‘sick role’ for